Twenty years ago on June 5th 1981, the Centers for Disease Control published the first reports of a devastating new disease that would come to be known around the world as AIDS. The article published in the Morbidity and Mortality Weekly Report (MMWR), a publication of the CDC, referred to 5 Pneumocystis cases (PCP), which were discovered among a group of gay men in Los Angeles (one of them being Julian Turk). The findings by Dr. Michael Gottlieb and Dr. Joel Weissman sparked a string of other discoveries across the country. Although we have come to know now that AIDS has existed for a much longer time period than originally believed, this was the first actual published report that other physicians could reference. The very next month, the New York Times ran an article entitled "Rare Cancer seen in 41 Homosexuals" referring to cases of Kaposis Sarcoma. Doctors in major urban areas all over the country started noting the same types of illnesses among their patients. Because the disease was so prominent and visible in the gay population, and most of the reported cases were in that group, the disease would be tentatively named "GRID" or "Gay Related Immune Disorder". In October, the CDC declared the new disease an epidemic.

At the end of 1981: 422 persons were diagnosed with the disease in the US; 159 were dead.

New changes in treatment guidelines suggest taking antiretrovirals to treat HIV infection when your T-cells drop to 350 or below.

The "when to start medications" theory remains unresolved.

New HHS Guidelines for the care and treatment of adults with HIV infection advise doctors not to hit-early.

1982

The National Institutes of Health (NIH) rejected a proposed study to determine whether or not women get AIDS. Cases more than tripled in many cities across the country. As fear grips the gay community, organizations are formed to respond. The Gay Men's Health Crisis is founded in New York City, The KS/AIDS Foundation (later renamed the American Foundation for AIDS Research (AMFAR) is launched in San Francisco, and the first PWA coalition is formed "People with AIDS/San Francisco". Intravenous drug use is recognized as a way to transmit the disease, so it becomes known as a gay or junkies disease, effectively causing many people to believe they are not at risk of contracting AIDS. Meanwhile women are getting sick with AIDS related diseases and they are dying, but for the most part are going unnoticed, undiagnosed, uncounted and are falling through the cracks. Many who are diagnosed are classified under the risk category of "Prostitutes". In September, the name of the disease is officially changed by the CDC from GRID to Acquired Immune Deficiency Syndrome (AIDS). At the close of the year 1982: 1,614 are diagnosed with AIDS in the US; 619 are dead.

1983-1984

In June of 1983, PWA's from many cities across the country attend the National Lesbian and Gay Health Conference in Denver. Together they founded the National Association of People With AIDS and developed a document entitled "The Denver Principles" which defines self-empowerment for PWA's. (see Women Alive newsletter Winter 2000 and try to follow these principles.)

In 1984 the race to discover what causes AIDS is nearing the finish, with Luc Montagnier of the Pasteur Institute in France, and Robert Gallo of the National Institutes of Health (NIH) both declaring that they have discovered the virus. Luc names his virus "LAV" and Gallo names his HTLV-III. There is still no test available to detect the virus among the general population or in the blood supply. The virus later becomes known as HIV (Human Immunodeficiency Virus). As of December 31, 1984: 11,055 persons are diagnosed with AIDS in the US; 5,620 are dead.

"We should cancel the cocktail parties and awards banquets and start the month of June in the streets . . . screaming bloody murder."

1985

The CDC estimates that 500,000 to 1 million people are infected with HIV (The hysteria is building). In March, an HIV antibody test is licensed and blood banks begin screening the blood supply for antibodies. Several polls show that 72% of Americans are in favor of mandatory testing; 51% think that people with HIV should be quarantined; and 15% believe in tattoos to identify persons with HIV. In June of 1985, the first International Conference on AIDS is held in Atlanta, Georgia. October marks the start of the AIDS Vigil in San Francisco as well as Los Angeles, where activists camp out in tents and continue a constant vigil (that lasts until 1995). At the end of 1985: 22,996 persons are diagnosed with AIDS in the US. 12,592 are dead.

1986

Hepatitis B study participants consisting of gay men and IV drug users are tested for HIV in San Francisco: 75% test positive. In May, The surgeon general calls for AIDS education for children of all ages, and urges widespread use of condoms. June, The Second International Conference on AIDS is held in Paris. The US Justice Department rules that people with HIV (and even those perceived to be infected, i.e.: gay) may be legally fired. This decision sparks uproar in the community and is condemned by the AMA and other public health organizations. In July, Rock Hudson announces that he has AIDS. August 1986 finds a 14-year-old hemophiliac with AIDS named Ryan White barred from attending public school in Indiana. In the face of AIDS-hysteria based school boycotts, Reagan officials urge the public not to panic and insist that the epidemic remains confined to gay men and IV drug users. In September, the US military institutes mandatory testing for all troops. Bills are introduced in 20 states pertaining to PWA quarantines, food handling restrictions, attempts to prevent PWA's from holding educational jobs, forcible testing of arrested prostitutes, and criminalization of HIV transmission. (Several bills passed.) AIDS cases have now been reported on every continent in the world. At the end of 1986: 42,255 are diagnosed with AIDS in the US, 24,699 are dead.

1987

Robert Gallo and Montaigner are declared co-discoverers of the virus. The World Court decides that LAV and HTLV will now be known as HIV. The organization "The AIDS Coalition To Unleash Power" (ACT UP) is started. The AIDS Clinical Trials Group (ACTG) is formed by the National Institute of Allergy and Infectious Disease. Women of childbearing age are excluded from participating in trials unless they agree to use birth control pills or IUD. No childcare, transportation, or on-site GYN care is available to women who wish to participate. Trial inclusion/exclusion criteria read: "No pregnant women and no non-pregnant women" allowed. In February, Burroughs Wellcome (now known as Glaxo-SmithKline) announces the price of AZT -- $10,000 per year. This makes AZT the most expensive drug in history. March, the Federal government announces an appropriation of $30 million dollars to purchase AZT for the uninsured. In their first protest, ACT UP responds to the price of medication by blocking Wall Street in New York. June of 1987, gay and lesbian protesters in Washington DC encounter DC police adorned with yellow rubber gloves. Northwest Orient Airlines refuses passage to people with AIDS. Lesbian and gay activists stage a national phone-in reservation/cancellation protest. After two days of nearly empty planes, Northwest changes it's policy. In July the US Public Health Service adds HIV to the list of "communicable diseases of Public Health significance". This makes it possible for U.S. immigration officials to deny entry into the country by HIV infected travelers or immigrants. As the year goes on things only get worse. In August, the Rae family including HIV+ hemophiliacs (Ricky Rae and his two brothers) living in Florida are barred from their church and school. After they successfully sue to enroll the kids back in school, their house is burned to the ground. October the first national display of the AIDS memorial quilt is held in DC. At the end of 1987: 71,176 people are diagnosed with AIDS in the US, 41,027 are dead.

1988

Although the press reports that women are one of the fastest growing populations with HIV, Cosmopolitan Magazine publishes an article stating that "Most heterosexuals are not at risk", and further stating that it is impossible to transmit HIV using the "missionary position" (effectively influencing millions of women to believe that they could not contract the disease). In May, the national civil rights Commission holds a hearing on "the right to discriminate against PWA's". ACT UP sends in silent protesters wearing clown masks. On October 11, 1988 a huge demonstration organized by lesbian and gay members of ACT UP is held at the FDA to protest a lack of action regarding drug development. 180 persons (all are gay and many have AIDS) are arrested, and within months the FDA drastically speeds up the drug approval process. December 1st 1988 marks the first World AIDS Day event.

At the end of 1988: 106,994 are diagnosed with AIDS in the US, 62,101 are dead.

1989

In response to community protest, the FDA makes the experimental CMV drug DHPG (soon to be known as Ganciclovir) available for "compassionate use" while it reconsiders the process for drug approval. In April, the Immigration Dept. detains HIV+ Dutch visitor Hans Verhof while he was attempting to attend a conference in San Francisco. Lead by ACT UP, a number of AIDS organizations announce a boycott of the upcoming 1990 International AIDS Conference in San Francisco due to US Immigration policies. In September, ACT UP/New York disrupts trading on the New York and Paris stock exchanges to protest the price of AZT. At the end of the year 1989: 149,902 are diagnosed with AIDS in the US, 89,817 are dead.

1990

In January the lesbians of ACT UP spearhead a massive and boisterous protest at the CDC headquarters in Atlanta to expand the AIDS definition to include diseases specific to women, people of color, and children. Women with AIDS lead the demonstration, 94 are arrested. April 8, 1990, Ryan White dies of AIDS related complications. April 19, 80,000 Haitians and supporters march across the Brooklyn Bridge to protest federal guidelines that exclude blood donations from Haitians because of their "perceived" HIV risk category. Cook County Hospital (the only hospital with an AIDS ward in Chicago) refuses to admit women stating that they have no women's AIDS ward. Gay and lesbian activists set up a ward in the street in front of the hospital. 35 are arrested. Two days later, the hospital admits women with AIDS for the first time. May of 1990 The Ryan White Comprehensive AIDS Resources Emergency Act is passed. Congress appropriates 350 million dollars. In May, ACT UP's gay, lesbian, and AIDS activists gather at the NIH to protest the lack of women and people of color in clinical trials of drugs being tested to treat AIDS. As a result of continuing pressure, officials from NIAID meet with women treatment activists (most of whom are lesbian ACT UPpers) who demand a national conference on women and HIV, a study of the natural history of HIV infection in women, and a women's committee for the ACTG system. (The natural history study that became known as the WIHS (wise) study begins in 1993). The Americans with Disabilities Act becomes law,thereby protecting people with disabilities including HIV infection from discrimination. In October, a national Speak-Out by women with AIDS is held in Washington DC to protest Social Security definitions of disability which discriminate against women and people of color. In December the ACT UP Women's Caucus protest and testify at the CDC calling for an expansion of the AIDS definition. NIAID holds the first National Women and HIV Conference. ACT UP releases the Women's Research and Treatment Agenda. At the end of 1990: 198,466 persons are diagnosed with AIDS in the US, 121,255 are dead.

1991

In January, the DHHS proposes to remove HIV from the list of diseases that are used to bar entry into the US. Over 50,000 letters are written, many of which encourage the ban to remain in place. The INS postpones all actions. In August to protest US Immigration policies, Harvard University announces that the Eighth International Conference on AIDS will be moved from Boston to Amsterdam. PWA's from around the world protest at the US Consulate in Holland. In October the US approves ddI, the second anti-HIV drug. In November, Magic Johnson announces that he has HIV, President Bush appoints him to the National Commission on AIDS. At the end of the year 1991: 257,750 are diagnosed with AIDS in the US, 157,637 are dead.

1992

In April, Presidential candidate Bill Clinton meets with self-appointed gay/lesbian community representatives and United for AIDS Action to discuss his AIDS policies (the "community" succeeds in keeping ACT UP out of the meeting). He vows to have people with AIDS speak at the Democratic National Convention. In July, Elizabeth Glaser and Robert Hattoy step up to the plate. In August the Republicans follow suit with HIV positive speaker Mary Fisher. In November 1992, Bill Clinton is elected president. He promises full funding of the Ryan White CARE Act. After continuous pressure for several years, the CDC expands the definition of AIDS to include: Cervical cancer, recurrent bacterial pneumonia, TB in the lungs, and fewer than 200 T-cells. The surveillance expansion becomes effective in 1993 and the numbers of women diagnosed with AIDS increases dramatically. (Surveillance agencies finally start to look at what has been in front of them for over 10 years). After years of pressure from lesbian and gay activists, the FDA sets up the Fast Track approval system for AIDS and cancer drugs. At the end of 1992: 335,211 are diagnosed with AIDS in the US, 198,322 are dead.

1993

In response to protests by ACT UP's Lesbian Caucus and others, HHS Secretary Donna Shalala forms a Lesbian AIDS Task Force. In subsequent months, the CDC begins funding lesbian-specific prevention programs, and the women's natural history study includes lesbians. In June, sexual transmission passes injection drug use as the major form of HIV transmission for women. The Female Condom gets approved by the FDA, at a cost in the US of about $3.00 each. The US Postal Service issues a commemorative AIDS Awareness red ribbon stamp. The Committee of Ten-Thousand, a group of Hemophiliacs who were infected by tainted blood products, file a federal class-action lawsuit against the companies that make clotting factor. They later win $100,000.00 each and demand "The Ricky Rae Act". At the end of 1993: 411,887 are diagnosed with AIDS in the US, 241,787 are dead.

1994

Although new AIDS cases in the US have started to decline slightly, the CDC announces that heterosexually acquired cases of AIDS rose 130% from 1992 to 1993. In July, the FDA approved the fourth anti-HIV drug d4T or Zerit. In August results are published from the 076 trial of AZT in pregnant women speculating that AZT reduces transmission in newborns. In December, President Clinton fires then-Surgeon General Jocelyn Elders for saying (during an AIDS prevention speech) that masturbation should "perhaps be taught" in schools. Actor Tom Hanks wins an Oscar for his portrayal of a lawyer with HIV in "Philadelphia". At the end of 1994: 478,756 are diagnosed with AIDS in the US, 288,597 are dead.

1995

The CDC announces that AIDS has become the leading cause of death for Americans aged 25-44 (The biggest increase is in African Americans and Latinos. Again, they start to look at what has been there all along.) In January, at a meeting of the HHS, an FDA commissioner publicly supports requiring that drugs be tested in women. In November, 3TC is approved as the 5th HIV medication made available. December 1995, a pivotal point in the epidemic, Saquinavir (the first Protease Inhibitor) is approved. Rap artist Easy-E dies 10 days after releasing a statement saying that he has AIDS, supporting the importance of getting tested and treated early. At the end of 1995: 534,806 are diagnosed with AIDS in the US, 332,249 are dead.

"What many of us in the HIV community are witnessing in recent months is scary. Nothing is promised to any of us, and the battle is not over, not yet."

1996

Ritonavir and Crixivan are approved. Under pressure from Clinton, congress repeals a law requiring discharge of HIV+ military personnel. The FDA approves a Viral Load test to measure HIV levels in the blood. The 11th International Conference on AIDS is held in Vancouver, Canada. Exciting, but premature data on Protease Inhibitors is presented. Dr. David Ho announces that it may be possible to "eradicate" HIV. Everyone jumps on the bandwagon, and cover stories proclaiming "AIDS Breakthroughs" and "The End of the Epidemic" adorn many publications. Many people are "virtually brought back from death's door" with the advent of the new meds. There is a general feeling that the worst is over. Cutsie ads, displaying "healthy, smiling, attractive, fit, sexy" people begin popping up in HIV related magazines to promote antiretroviral. "Look, take this medication X ...and you can climb mountains!" Many physicians begin prescribing these new drugs. President Clinton's request from congress for higher spending levels for federal funding of AIDS programs is approved. ADAP receives a big increase in funding. The AIDS memorial quilt is displayed in Washington DC. 40,000 panels (less than 10% of AIDS deaths) are viewed by over 750,000 visitors. This is the last time the quilt is viewed in its entirety. Newsweek magazine headlines its last 1996 issue with "The End of AIDS?" At the end of 1996: 581,429 are diagnosed with AIDS in the US, 362,004 are dead.

1997

The mood of the country dramatically changes about AIDS. Hope is the big word. Many people feel that the worst is over. Magic Johnson's wife proclaims, "he is cured" due to his undetectable viral load (a misunderstanding that causes much confusion among the general public). New York State institutes mandatory testing of all newborns for HIV. The 1997 National Conference on Women and HIV takes place in Pasadena CA. Activists from Women Alive and other groups stage a demonstration at the conference to protest Donna Shalala's policies regarding women with HIV. Chants of "Do Research to Save Women's Lives" echo the conference halls and the LA times reports the story. Strange body changes (which come to be classified as Lipodystrophy) are noted in many people on combination therapy. Even though many are doing well on the PI containing combos, for others it is only a brief reprieve as drug resistance begins to appear. For others, the new meds have come too late. At the end of 1997: 631,105 persons are diagnosed with AIDS in the US, 383,927 are dead.

1998

While new infections decline among Caucasians in the US, communities of color continue to be hardest hit with rising infection and death rates. Pressure from African American leaders and PWA's, moves President Clinton to declare AIDS a "Public Health Emergency" in African American communities, (something that gay and lesbian activists warned everyone about in the late 80's; something we "the AIDS community" have known for a very long time:). Shortly thereafter, $156 million federal dollars are earmarked for communities of color. Unfortunately, the CDC waits until October of 1999 to release the funds. Tragic discrepancies relating to the care of prisoners with HIV comes back to the forefront when California PWA prisoner Michael Van Straaten, commits suicide in his cell to protest conditions and treatment of HIV+ prisoners. (The treatment of prisoners with AIDS had been a focus of the ACT UP chapters across the country. Most notable cases include the first compassionate release for a woman prisoner ever, and the murder of an inmate in Wisconsin where prison guards dressed in full riot gear stuffed towels in the prisoners mouth and pounced on his chest until he was dead.) The first Vaccine trials are begun, as HIV negative volunteers begin rolling up their sleeves. "Adherence! . . . Compliance! . . . Don't miss a dose!" messages are bombarded at people on combination therapy. Drug regimens that require 95% adherence are beginning to take a toll on the average PWA. Deaths from AIDS are cut in half in the US. The San Francisco "Bay Area Reporter" news publication sends out its first issue since 1982 without an AIDS related obituary. After a much promised lift on the ban regarding needle exchange, President Clinton, Secretary of Health and Human Services -Donna Shalala and then-AIDS Czar Sandy Thurman cop out under pressure from opponents. The "Berlin patient" triggers questions in the medical arena when after several interruptions in treatment he remains undetectable off of meds. At the 12th World AIDS Conference in Geneva, the huge gap between the US and the rest of the world relating to AIDS care and treatment is brought to the forefront. At the end of 1998: 674,267 are diagnosed with AIDS in the US, 401,857 are dead.

1999

It seems that AIDS and HIV has taken a seat on the back burner in the US. Funding from the private sector is down. Many people have the belief that HIV is "manageable". It seems that the country is "burnt out" on AIDS. While complacency takes hold here, the World Health Organization reports that AIDS has become the leading cause of death in Africa, and kills more people world wide than any other infectious disease. HIV resistance testing is approved in the United States. The new "Face of AIDS" begins to rear its ugly head as many PWA's are showing the battle scars of long-time antiretroviral therapy; sunken cheeks, deep facial lines, pouched bellies, and scrawny legs. In October, (under much controversy and with no federal funding assistance,) the 1999 National Conference on Women and HIV is held at the Los Angeles Convention Center. Over 1000 HIV+ women attend the three-day event; making it the largest gathering of HIV infected women in history. New information on Lipodystrophy and other HIV related complications are presented at the conference. Women Alive presents info on a new clinical trial geared to looking at gender differences in antiretroviral treatment. (The trial never comes to fruition due to more RED TAPE) At the end of 1999: 716,964 people have been diagnosed with AIDS in the US, 418,130 are dead.

2000

The "Hit Hard, Hit Early" theory takes a dive, as many PWA's begin experimenting with Structured Treatment Interruption. Due to long-term toxicities and resistance related problems, "STI's and Drug Holidays" have become new terms in the HIV vocabulary. People are realizing that HAART therapy is not a long-term solution to the problem, and many researchers have begun to seriously look for alternative ways to fight HIV such as Immune-based therapies. The 12th International AIDS Conference takes place in South Africa. (The continent hardest hit by AIDS.) In parts of Africa, one out of four persons are infected with HIV. Protesters demand a price reduction in AIDS medications for poorer countries. Names-reporting remains a controversial issue, but few are left to fight the fight. Many states instead choose to develop a unique identifier system to track HIV infections, in lieu of names reporting. The AIDS communities grow evermore complacent and many accept names reporting as a means to get funding to provide services. True HIV infection rates in the US remain unknown, as the CDC only tracks AIDS cases. With more and more people on combination therapy, and less people progressing to AIDS, it's truly a guessing game as to the actual amount of HIV infection in the US.

As of June 2000: 753,907 AIDS cases have been reported in the US, 438,796 people have died . . . 64,373 of them were women.

Editorial note:April 2001: At this writing, the AIDS rates presented above are the latest statistics available from the CDC. The preceding article was meant to give Women Alive readers an idea of the struggles and suffering that it has taken to get us to this point. It is by far not a complete history of the epidemic, and is only meant to encourage women to learn more.

Many of us who were diagnosed in recent years have no idea of the sacrifices it took by many brave activists and PWA's {most of whom were gay and lesbian (including people of color)} to have the services and treatments that are available to us today. HOPWA housing and other such benefits "didn't just happen" because the government or the general public wanted to be "nice" to us, quite the contrary; they were fought for by many who didn't live long enough to see their work come to fruition.

What many of us in the HIV community are witnessing in recent months is scary. So far in the year 2001, there has been a resurgence of AIDS related deaths. Many long-time survivors of AIDS, like Stephen Gendin, and our own Elsa Smith, have lost the battle. Many of them were taken quite suddenly. Pancreatitis, liver failure, Hepatitis C, are just a few of the complications. The Bush administration has already begun to take stabs at our programs, and it is only going to get worse. So for us, the fight is still very real (you can join in at any time). Nothing is promised to any of us, and the battle is not over. Everything that was fought for and won, for over 20 years now, can be taken away in 2 minutes with a presidential signature. AIDS is still a crisis, period. It is up to us to carry the torch into the next 20 years.

As we approach the anniversary of the AIDS epidemic in the US, the words of Cleve Jones, founder of the Names Project (The Quilt people) ring all too clear:

"In a few weeks we'll all be remembering, as the nation and the world pauses, however briefly, to note the 20th year of the pandemic. How we choose to mark this tragic milestone has been the subject of discussion around the country and observances are being planned by AIDS organizations in every city. In my opinion, the last thing we need is a month of self-congratulatory black-tie galas, fundraisers for the AIDS bureaucracy or sentimental ceremonies. While our hearts may be filled with many emotions, there are only two worth expressing at this perilous time: grief and rage. Grief for the millions who have died and the millions who are dying. Rage at the indifference, greed and stupidity, which permit this grotesque calamity to continue. We should cancel the cocktail parties and awards banquets and start the month of June in the streets of Washington, DC -- screaming bloody murder."

Sources for this article include the Women Alive Archives, the CDC, and the PWA Leadership Training Institute.

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